So i haven't written in a while...To sum things up. Lily had and still has fluid in both ears. Going on a month and 1/2 now I think? So she has been without her hearing aid for some time. She can't wear it because it would distort the sound that she receives from it.
Fast forward to December 12th...I took Lily in to see her ped in the morning because she was miserable. She was screaming and screaming like no other cries we had ever heard for a few days before that. I was told she had a cold. no fever though. I took her that afternoon to see her ear ENT doc. She said that it would be ok for our nose ENT doc to do ear tubes (FINALLY!!!!), as well as the nasal endoscopy. When I asked for an ABR, she kept saying Why? Hello!! I want to know if she is declining. Mom. Didn't seem good enough for her so I mentioned the aud at Easter Seals. Then she said ok. So we are shooting for January 21st. It will be an overnight stay in the obsevation unit. So after that I have seriously considered switching her ear ENT to a great doc at Comer's. We shall see.
So I am trying to change her diaper the next day, Saturday. Her crying is so heart wrenching that I get nauseous, call for Jim to take over and run to the bathroom. I just could not bear it. When she is not sleeping she is just crying. So we took her to the ER at our nearest hospital ( the one where she was born). They took an xray to check things out. We swapped out her Mic Key button a few days before and that was fine. It ended up that she had a severe case of gas. We ended up with a great nurse that had once worked at Children's, Deanne. She had worked for Lily's former GI as well. She said that we should have been told to vent Lily via her Gtube. Well, DUH, I thought. I felt awful because it was such a simple thing. But no one told us. Not the ped surgeon who put it in, not the NP, not a nurse. I spoke with her hearing therapist on Monday and she said we should try and do it before every feed if we can. And, I thought, before spending 20 minutes giving her meds so it doesn't all come back up. I think I will be calling one of the GI guys that her ped suggested after all.
After venting we got our old Lily, Lily Bean, Bean-Bean, Sweetie Bean back! She is all smiley and happy and babbling again. because of the cold we had to cancel her Video Swallow Study. Hopefully today we will be able to reschedule it soon.
Caught on film just before OT this week
This ISN'T Speech therapy day??
Stacking therapy
See...this HAS to Speech day! Isn't this my sippy cup??
3 comments:
Lily, you are TOO CUTE FOR WORDS! Tell your mommy thank you, thank you for posting these pictures of you! I am so sorry you weren't feeling good, and I am so glad it got figured out and you are back to your sweetie pie self!
Oh man that is awful about the gas/venting. I can't believe nobody told you...actually I can...we found we learned most things on our own or from other families now that I think back to it all. I hope she gets her tubes in SUPER QUICK and that they are the butterfly tubes (more permanent). Kennedy had only a moderate-severe hearing loss at birth but because of recurrent fluid/infections in the ears, lost another 50dB taking her to a severe-profound loss so I am always preaching to people to be tough with doctors who want to keep waiting to put tubes in - it's not worth it and our kids have enough to deal with!
(okay, down off soap box now LOL)
Have a great and wonderful holiday season, may it be healthy, peaceful and relaxing. Lots of love from the Weir Family
(New Brunswick, Canada)
xo
Very cute pictures and I am glad she is feeling better. I had also learned more about our G-tube on our own then from the doctor. We were never told how offen to change it. It was horrible.
Hugs,
Crystal and Eva
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